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    • #15767
      Kathleen Sheffer
      Participant

      Do you set boundaries for yourself with social media and online disease communities? Why or why not?

      I have identified that I need to do this for myself to help with my anxiety and ability to function in my daily life.

      How many of you use Facebook and see the periwinkle flame or ribbon or angel wings every time a PH patient passes away? I have hundreds of friends in the PH community so every time someone dies, these images fill my newsfeed. The loss makes me so sad.

      Certainly I’ve lost close friends to disease and in those cases I enter a more natural grief process. But more often than not, I didn’t know the person outside of social media — we weren’t close friends, and yet the loss deeply affects me. I’m reminded of how close I came to death three years ago and how tenuous my health is now. I think of what my family and friends will post when I die. Do you have these thoughts as well? When the person is a close friend, I don’t worry so much about my own health, but miss my friend.

      Have you noticed that people post more to social media when they are doing poorly than when they are doing well? Often we think of social media as a charade people use to make their life look better than it really is. But that doesn’t seem to be the case for people with chronic illness, or for the community as a whole.

      Nobody posts an awareness ribbon when a PH patient has a good day with fewer symptoms than normal. That person probably won’t get on an online chat room to brag about their awesome day. I struggle to write columns when I’m doing well because I’m busy doing well and can’t think of anything relevant to write about. However, when I’m in the hospital or struggling with a health concern, I have ample material to write about — how sad is that?

      All of this is to say, it can become really quite disheartening to be as tapped into the disease community as I am. At the same time, it’s my job to be. It gives me fulfillment to meet others with similar chronic illnesses and to offer them and their family support. Let me be clear: I never regret getting to know someone who later passed away. My life is better for having known them.

      What’s really stressful for me is to follow stories of people I don’t know who are sick and dying. Does anyone else do this? I get obsessive about checking their Facebook or CaringBridge pages hoping and praying their health will improve. I worry about them, their families, my family, and me.

      Even when it’s not a life-or-death situation, being active in various online groups can increase my anxiety. The other day I was scrolling through my feed and came across some messages between patients taking Prednisone and complaining of back and hip pain. I’ve been battling back and hip pain for a year now so I read further. Their pain is a result of osteoporosis, a condition I’m at increased risk for because I’m on Prednisone for life. Naturally, I made the jump and called my nurse because I had diagnosed myself with osteoporosis and wanted a bone density scan and an MRI. No, the nurse didn’t schedule me for either of those scans. But I’m still worried about it every time my hip hurts! (I’m getting an MRI somehow, don’t worry).

      Wow, this is awfully long-winded. Sorry! I would love to know where you draw the line between what’s helpful from your online disease communities and what’s harmful. Given the numerous benefits I get from being active in these communities, I’m struggling to decide how to do this for myself. How do you regulate your involvement?

    • #15804
      Jimi Mcintosh
      Participant

      I have had to set boundaries, though at times, I want to tell the world that I suffer from PAH. I am tired of the stares from strangers, the fear in their eyes when I am short of breath, coughing and wheezing. I want to tell them that I am not contagious and they cannot get this by being in their space. I now know how people with HIV MS and Lupus, feel in public.
      I have a daughter that has commented that I am always sick, so why include me. She seldom calls, it hurts, I tell myself that this is her way of dealing with my demise. Same goes for church members, long time associates and far weather friends, they stopped calling and coming by.

      • #15806
        Brittany Foster
        Keymaster

        Hi Jimi,
        That is so awful to hear that many of your friends and even family members just do not know how to support you in the ways that you need support. Sometimes my friendships and relationships seem like they are heading towards that point and I always try to remind myself that people don’t just “know” how to act or what to say. But, that’s still not an excuse for not even reaching out to you or not doing things that you CAN do. It’s unfair how some people are. Just know that you always have support in communities like this. I wish we could all meet in person, but I’m thankful for this online community and the understanding we all have for each other.

    • #15822
      Robin Webster
      Participant

      So far, this is the only PH social forum I’ve been able to join and remain connected to, both reading and contributing. Any previous time I have had to pull away from it, due to what has been mentioned about the loss of life (or even just extreme complications, depression, etc.) Like, when I first started getting the printed PH news magazine, that giant list of members who had passed away took me to a dark place. Even though I am a positive person and try to stay in a good mental place about my various illnesses, I am accepting of my eventual reality. So I’m not in denial, but … somehow, seeing that giant list of deaths … or online the repeated mention of it in the social forums … well, that is just too much reality all at once, right up in my face. So I back away out of self-preservation mode. In a discussion with my doctor, he agreed with me that oftentimes those contributing the most on social forums (whether it be PH or cancer) are those who are in the worst stages and have ample time to sit in front of the computer since they have more physical limitations. Those who are doing well and have found therapies that work for them are off working or just living their lives and don’t have as much time to post or reply. So it may SEEM as if everyone is doing poorly when actually that’s a naturally skewed segment of those affected. The support and shared experiences of a community can be a great thing. But I think we all need to stay tuned in to when we just need to back away from it a bit and regain our own focus.

      • #15827
        Brittany Foster
        Keymaster

        Robin,
        You make so many great points! I try not to get caught up in the negative talk but I also know that with this disease comes a lot of difficult topics to discuss and I am open to all discussions here for sure. The great part about being on a forum like this is that there are a wide variety of topics and members are able to see what the topics are before reading and responding to them. It is so hard to see of all the loss in the community and I could see how that would trigger others to think about that reality for themselves and their own mortality. It just is a difficult thing for so many reasons. I always try to take mental breaks if needed, even as a forum moderator. It can get overwhelming and I can always tell when I am not in a good head space to post something or share something. Breaks are much needed when it is hard to stay “positive” and on days when I am feeling depressed. But, I have also shared on here when I am having a difficult time and members have been so helpful in pulling me out of that. So I appreciate that too!

    • #15823
      Robin Webster
      Participant

      And on a TOTALLY unrelated topic … Brittany, every time I see that KEYMASTER banner on your posts, I giggle and think of the Ghostbusters movie! LOL!

      • #15826
        Brittany Foster
        Keymaster

        Robin,
        I’m secretly a GHOSTBUSTER !!! SHHHH don’t spill my secret identity hahaha!!!!

    • #15809
      Kaye Norlin
      Participant

      I think everyone needs to set boundaries, so …yes I do. I don’t care to see what people had for lunch and I know that’s minor but it can suck your time and none of us have that much of it. I also don’t like people who are mean or rude so, if something looks as though it is headed in that direction, I stop reading and have been known to unfriend them (if it is repeated behavior). My biggest pet peave is that people can give stupid and potentially dangerous advice. that can really cause anxiety so I generally don’t read or I ignore the posts, unless it looks as though someone is about to do something that will harm them, then I HAVE to speak up.
      I think we should start a tradition of posting when someone does something cool or when they have a good day. How about, Kathleen?!

      • #15828
        Brittany Foster
        Keymaster

        That would be a great topic post ! I can even start it with a post about “Tell me Something Good!” and others can respond to it. I will do that later on today so I would love for you to share something positive that is going on right now or something that happened recently for you that is good! 🙂 Great idea ! Is it okay to give a shoutout to you for the idea?

      • #15829
        Kathleen Sheffer
        Participant

        Sounds like a great tradition, Kaye! Even if you have a bad day there’s usually some good to be found. Today the sun came out for ten minutes and I got to take some photos without getting rained on! What was a good part of your day?

    • #15830
      Jimi Mcintosh
      Participant

      Happy Valentines Day to everyone, today was a great day, I broke the rules and had some candy and smothered liver with oonions for dinner. Everyone desires a day when you can let go and live. To those in the frigid north and Midwest, thinking of you as we deal with possibly 6 days of rain. Costco has some new low/no salt seasonings that taste good. I used some on some jerk chicken with brown rice and black beans. Remember tomorrow is a new day with new hopes, dreams and opportunities. Trump is considering a “Right to Try” bill that allows critically ill or people on expensive meds to try these experimental meds and treatments without waiting forever for the FTC approval. If passed you will have a voice in your treatments
      That

      • #15834
        Brittany Foster
        Keymaster

        Hi Jimi,
        I’m glad that you were able to enjoy your Valentine’s Day and that you decided to treat yourself to what you wanted ! That has always been something that I love doing and just taking a break from the reality of the strict “diet” and allowing myself to splurge every once in a while! Sounds like you had a great choice of food too. The low/no salt seasoning has been a LIFE SAVER for me because I CANNOT have anything too plain or I won’t eat it hahaha! Good to know that they are getting more of a selection. Thank you for the positive post and for the uplifting words of encouragement ! I’m sure others needed to hear that today too.

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